New England Children with Genetic Disorders and Health Care Reform: Information and Recommendations for State Policymakers September 2, 2014 Meg Comeau, MHA Chair, New England Genetics Collaborative Health Care Access and Financing Workgroup Co-Principal Investigator, The Catalyst Center
Welcome and introductions New England Genetics Collaborative at the University of New Hampshire’s Institute on Disability – http://negenetics.org/ Catalyst Center at the Boston University School of Public Health’s Health and Disability Working Group – http://catalystctr.org
What are genetic disorders? • The human body is made up of a variety of different kinds of cells • The cells get their instructions on how to function properly from proteins made by genes • When there is a change in the chemicals or DNA that make up the genes, a genetic condition or disorder results • There are three kinds of genetic disorders: – single gene disorders (like cystic fibrosis) – chromosomal abnormalities (like Down syndrome) – multifactoral genetic disorders (like some instances of breast cancer)
Who are New England children with genetic disorders? • Ages 0-17, living in one of the six New England states • Scattered across a wide range of diagnoses • Some dxs are more familiar (Down syndrome, cystic fibrosis, sickle cell); many are rare • No single source of comparable data for ALL genetic disorders • Data for children with special health care needs (which includes children with genetic disorders) can be useful when generalizing is appropriate
What does the data tell us about CSHCN (including children with genetic disorders) and insurance? • What kind of insurance they have (private, public benefit program, both, uninsured) • Is it adequate in meeting their health care needs? • What is the impact of insurance inadequacy on their families?
Breakdown of insurance coverage type for New England CSHCN Insurance Type CT MA ME NH RI VT US Private insurance 64.5% 63.6% 38.7% 59.4% 51.3% 38.8% 52.4% only Public insurance 27.7% 24.4% 49.6% 31.6% 34.6% 48.8% 35.9% only Both public and 6.9% 11.2% 10.0% 6.9% 12.3% 11.3% 8.2% private insurance Uninsured 1.0%* 0.8%* 1.7%* 2.0% 1.7%* 1.1%* 3.6% *Estimates based on sample sizes too small to meet standards for reliability or precision.
Percentage of currently insured NE CSHCN whose insurance is inadequate in meeting their health care needs % CSHCN whose CT MA ME NH RI VT US insurance is inadequate 38.5% 33.7% 26.3% 28.9% 31.3% 27.6% 34.3%
Impact of insurance inadequacy on NE families of CSHCN Impact on Family CT MA ME NH RI VT US CSHCN whose families pay more 24.6% 25.7% 17.4% 23.6% 16.8% 20.1% 22.1% than $1,000 out-of-pocket in medical expenses per year for the child CSHCN whose conditions cause 18.8% 19.1% 18.6% 19.6% 14.7% 17.3% 21.6% financial problems for the family CSHCN whose conditions cause 24.9% 27.5% 23.9% 23.0% 25.6% 27.0% 25.0% family members to cut back on or stop working
2012 NEGC Health Care Access and Financing Workgroup Family Survey • December 2012 online survey of NE families of children with genetic disorders • Parents self-identified as having a child with a genetic disorder – variety of dxs represented • Survey based on the Essential Health Benefit service categories in the ACA • Research question: what EHBs are being covered prior to implementation in 2014 and where are there gaps? • Response rate from each state was not high enough to generalize across the region, but gave us useful targets for future research and important insights from the family perspective
The 10 EHB service categories under the ACA • Preventative and • Ambulatory care wellness services, and chronic disease • Emergency services management • Hospitalization • Rehabilitative and • Laboratory services habilitative services • Maternity and and devices newborn care • Prescription drugs • Pediatric services, • Mental health and including oral and substance abuse vision care services; including behavioral health
What we learned from NE families of children with genetic disorders EHB categories with specific gaps: • Ambulatory services • Care for emotional, behavioral or substance abuse issues • Prescription drug coverage • Rehabilitative and habilitative therapies • Medical devices • Developmental screenings • Prescribed medical foods
What we learned from NE families of children with genetic disorders Need for other uncovered supports and services reported by families: – Respite care – Transportation – Services for transition to adult health care – Residential services – Personal care services – Home and vehicle adaptations
What we learned from NE families of children with genetic disorders • Cost is a major problem: premiums, high deductibles, co-pays, co-insurance, uncovered services were noted in almost every category • Administrative burden on families is high and a significant problem; many families struggle to get services paid for, even with insurance
Coverage that meets the needs of CSHCN, including those with genetic disorders, must be: • Universal and continuous • Every child has coverage and can stay on it without interruption • Adequate • Coverage pays for what children need • Affordable • Their families can afford the coverage and care they need without risking financial hardship, medical debt or bankruptcy
A step in the right direction… • The Patient Protection and Affordable Care Act of 2010 (Pub. L. 111-148) signed into law March 23, 2010 • The Health Care and Education Reconciliation Act (Pub. L.111-152) signed into law March 30, 2010 Together, they’re known as the Affordable Care Act, or ACA
Major Areas of Focus in the ACA • Insurance reforms (“Patient’s Bill of Rights” - consumer protections) • New or expanded pathways to coverage (Medicaid expansion, MOE, Marketplaces), paired with Individual Mandate (everyone has to have coverage) • Cost and Quality Provisions
ACA Insurance Reform and Consumer Protection Provisions – Selected Examples • Prohibition against denying coverage based on a pre-existing condition • Dependent coverage for youth up to age 26 on their parent’s plan, effective 2010 • No rescission of coverage regardless of the cost or amount of services used, effective 2010
ACA Insurance Reform and Consumer Protection Provisions – Selected Examples No more Annual and Lifetime Benefit Limits • Effective Now – No annual benefit cap allowed – No more lifetime benefit caps for existing or new plans • NOTE: benefits themselves can still be capped, e.g. 15 physical therapy visits, 15 mental health sessions per year
ACA Insurance Reform and Consumer Protection Provisions – Selected Examples • Preventative Services w/o cost-sharing (no co-pay, co-insurance or deductible charged – in network only) – Applies to all new (non-grandfathered) group health plans (fully insured and self-funded) and new individual policies issued or renewed on or after August 1, 2012
Recommendations of the United States Preventive Services Task Force (USPSTF) http://www.healthcare.gov/center/regulations/prevention/tas kforce.html Recommendations of the Advisory Committee on Immunization Practices (ACIP) adopted by CDC http://www.cdc.gov/vaccines/recs/acip/ Comprehensive Guidelines Supported by the Health Resources and Services Administration (HRSA) Bright Futures Recommendations for Pediatric Preventive Health Care http://brightfutures.aap.org/pdfs/AAP%20Bright%20Futures %20Periodicity%20Sched%20101107.pdf
HRSA’s Women’s Preventive Services: Required Health Plan Coverage Guidelines http://www.healthcare.gov/center/regulation s/womensprevention.html Recommendations of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children http://www.hrsa.gov/heritabledisorderscommitt ee/SACHDNC.pdf
New pathway to coverage: State Health Insurance Marketplaces • Opened for enrollment Oct. 1, 2013 • Coverage began January 1, 2014 • Choice of different individual policies and small group plans (aka QHPs) • Portal to Medicaid/CHIP eligibility determination (single application) – Open-ended enrollment for Medicaid and CHIP • Help for consumers in choosing a plan – comparison website, call centers, navigators, assisters • Tax credits and subsidies between 100%- 400% FPL
Essential Health Benefits (EHB) • Went into effect January 1, 2014 • The ACA requires that individual and small group plans, including those offered through the Marketplace, include “essential health benefits” • Also applies to Medicaid Alternative Benefit Plans (covering adult expansion population) • 10 categories of health services were identified in the ACA (several specific to pediatrics) • Private plans covering large groups and grandfathered plans are exempt , as are self-funded or ERISA plans.
Scope, duration and definition of the EHBs • ACA as passed directed the Secretary of HHS to determine the scope, duration and definition of benefits under the broad EHB service categories • 12/16/11 EHB Benchmark Bulletin – Instead of one standard benefit package for all state Marketplace and individual/small group plans, HHS authorized states to choose one of four kinds of current (2012) plans to use as a model or benchmark....
http://www.cms.gov/CCIIO/Resources/Data-Resources/ehb.html
Recommend
More recommend
